FINDS Community Report 2023: Family & Individual Needs for Disability Supports

The Family and Individual Needs for Disability Supports (FINDS) survey provides insights and understanding of the experiences of families supporting a family member with intellectual and developmental disabilities (IDD). It is critical research to inform better policy development.

The FINDS survey was initially conducted by The Arc of the United States in 2010. It was updated in 2017 through a collaboration between the Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc.

The 2023 report focused on:

  1. What are the challenges families face in meeting the support needs of their family members?
  2. What are the economic implications of caregiving?
  3. How does caregiving affect caregivers, and what supports do they need?

A better understanding of the experiences and needs of caregivers can help policymakers and others support caregivers in this critical role.

Promising Programmatic Practices for People With Dual Diagnosis

Incompass provides residential and day/employment programming for a dually diagnosed, forensically involved population as well as a residential program for individuals diagnosed with Huntington’s Disorder. In this webinar, Chris Snell, MS and Dorian Crawford, PsyD of Incompass Human Services will provide an overview of community-based service promising practices for an emerging, dually diagnosed population.

View session presentation slides here.

United States v. Mississippi

Filed: April 5, 2022

Court: Fifth Circuit Court of Appeals

Overview: Amicus brief supporting the district court holding that Mississippi’s mental health system depends too heavily on institutionalization and does not provide the community-based services that Title II of the ADA and Supreme Court precedent under Olmstead require.

Excerpt: “Because the United States established each of the three components under Olmstead, the district court concluded that Mississippi was required to provide the community-based services that had been lacking. This ruling tracked established precedent, was supported by the evidence, and should be affirmed.”

Case Documents

Amicus Brief

Disparities for People of Color With IDD in Accessing Long-Term Services and Supports

Amparo Ceja is a dedicated mother to her young son, Jesus. Jesus has Down syndrome. The Latino family has experienced discrimination and disparities because of their race and Jesus’ disability. Amparo is concerned about the disparities they and other Latino families experience in accessing disability services and supports. The COVID-19 pandemic deepened existing disparities. Amparo is worried about how persistent disparities will impact Jesus’ future after high school and the rest of his life, especially when she becomes too old to care for him. Amparo and other mothers joined forces with The Arc of California to launch a local chapter of The Arc called Madres Unidas Para Una Mendota Con Igualdad of The Arc. Angel Picon, Director of Community Organizing for The Arc of California, was instrumental in the formation of the new chapter and helps guide the mothers in their fearless advocacy to confront disparities and racism. Amparo, Jesus, and Angel shared their stories with The Arc.

En Español

Amparo Ceja es una madre dedicada a su pequeño hijo, Jesús. Jesús tiene síndrome de Down. La familia latina ha experimentado discriminación y desigualdad debido a su raza y la discapacidad de Jesús. Amparo está preocupada por la desigualdad que ellos y otras familias latinas experimentan en el acceso a los servicios y apoyos para personas con discapacidades. La pandemia de COVID-19 profundizó las desigualdades actuales. A Amparo le preocupa cómo las desigualdades persistentes afectarán el futuro de Jesús después de la escuela secundaria y por el resto de su vida, especialmente cuando ella sea demasiado mayor para cuidar de él. Amparo y otras madres unieron fuerzas con The Arc de California para lanzar una división local de The Arc llamado Madres Unidas Para Una Mendota Con Igualdad of Arc. Angel Picon, Director de Organización Comunitaria de The Arc de California, fue fundamental en la formación de ésta nueva division. Angel ayuda a guiar a las madres en su valiente defensa para enfrentar la desigualdad y el racismo. Amparo, Jesús y Angel compartieron sus historias con The Arc.

Better Care Better Jobs Act: What Grassroots Need to Know

Learn the basics about the Better Care Better Jobs Act and how it would transform Medicaid home and community-based services (HCBS).

The proposed $400 billion in funding would increase access to services and provide a long-overdue investment in the direct care workforce that delivers these services to people with disabilities and aging adults all over the country. You will hear from lawmakers about what we can expect in Congress and from consumers about the importance of Medicaid-funded HCBS and policy priorities that enable people with disabilities and older adults to live in their homes and communities.

Organized By:
The Arc of the United States, ACLU, AAPD, ANCOR, ASAN, Justice in Aging, Caring Across Generations and National Domestic Workers Alliance

Co-Sponsored By:
Care Can’t Wait, Disability and Aging Collaborative , and the Consortium for Citizens with Disabilities

The HCBS Access Act: A Law 70 Years in the Making

The Arc of the United States was founded over 70 years ago by families who wanted their family members with intellectual and developmental disabilities (IDD) included in every aspect of life. Yet, most people with IDD had to leave their families and go live in institutions to receive the daily supports they needed because of their disability.

Our system of services and supports for people with IDD has come a long way since those days, but many people with IDD and their families still struggle to plan for the services needed to live a quality life in the community. Many people with IDD wait years to get off the waiting list for services only to find few direct support professionals available to provide the services they need in the community and even more limited affordable and accessible housing. Even when they do find a home in the community and a trusted professional to meet their needs, they often have to start their search again in six months or a year because the turnover in the field is so high. Or worse, they move to another state to be near family after a parent dies and end up on the waiting list for services all over again.

Congress finally proposed a bill, the Home and Community-Based Services Access Act, to make changes to the system of support for people with disabilities to ensure community-based services are there for all people with disabilities who want to live their lives in the community, with their friends and family.

In this webinar, you will learn about barriers in the current system, the proposed changes, and what you can do to make sure these changes become a reality.

Read the full transcript.

Access webinar slides.

Speaker Bio: Nicole Jorwic was previously the Senior Director of Public Policy at The Arc of the US. Prior to joining The Arc, Nicole served as Senior Policy Advisor and Manager of the Employment First Initiative in Illinois. Prior to that appointment, Nicole served as the CEO/President of the Institute on Public Policy for People with Disabilities. Nicole is also an accomplished special education attorney and an advocate for students with disabilities and their families. Nicole received her JD and Child and Family Law Certificate from Loyola University and her BS from the University of Illinois. Nicole is also a sibling; her brother, Chris, is 31 and has autism.

Staying Connected During COVID-19: Tech Resources for Providing Support at a Distance

In this panel-led webinar, learn about different solutions available to chapters who look to connect and provide supports remotely to the individuals they serve. The 70-minute webinar includes information on technology platforms, best practices in virtual supports, and other vital insights.

 

Presenters

Abe Rafi, Rafi@TheArc.org
Senior Director, Technology Strategy & Programs, The Arc

Topics: Free and low-cost technology | Online Coaching Services

View The Arc’s Online Coaching Service document here.

 

Doug Meeker, doug.meeker@3rbehavioralsolutions.com

CEO, LifeSherpa

Topic: Overview of the LifeSherpa app, which uses video calling, notifications, reminders, and step by step routines that provide effective, secure solutions to managing remote teams and supporting people clients virtually

View LifeSherpa’s presentation here.

 

Maulik Trivedi, MD, maulik.trivedi@stationmd.com

Chief Strategy Officer, StationMD

Topic: Leveraging telehealth technologies to connect remotely to individuals in need of in-home medical care

View StationMD’s presentation here.

 

Byran Dai, hello@daivergent.com

Co-Founder & CEO, Daivergent, Inc.

Topic: Using remote technology to engage people, tap into remote work interfaces, hosting training and delivering curriculum for people during stay at home orders

View Daivergent’s presentation here.

 

If you have questions about these programs, please contact Stephane Leblois at Leblois@TheArc.org.

 

Alternative Day Programs During the COVID-19 Pandemic

Hear from five chapters of The Arc as they describe their steps for redesigning their in-person day programs to virtual learning platforms. This 90-minute webinar includes information on technology platforms, curriculum, staffing, and funding.

Interested in having your own copy of the presentation and documents it mentions? You can download it here.

 

Presenters

Tyler Frazee, tfrazee@stonebelt.org, Lifelong Learning Coordinator
Stone Belt Arc, Indiana
Topic: Facebook Live events

Gabrielle Szarek, gszarek@slarc.org, Director of Transition Services St.
Louis Arc, Missouri
Topic: Inspiring, Engaging and Motivating Virtually

Amber Nelson, anelson@arcofthecapitalarea.org, Director of Art and Education
The Arc of the Capital Area, Texas
Topic: Virtual Education during COVID-19

Joshua Weidenhamer, jweidenhamer@minutemanarc.org, Director of Day Habilitation
Minute Man Arc, Massachusetts
Topic: Who’s Zooming Who? Providing Remote Services Which Keep People Active and Engaged

Susannah Eaton-Ryan, Seaton-ryan@thearcofdelaware.org, Director of Employment and Outreach
The Arc of Delaware, Delaware
Topic: Supported Employment in the Time of Coronavirus

If you have questions about this program, please contact Karen Wolf-Branigin at  wolf-branigin@thearc.org

What Is the Census?

The 2020 census is coming! It’s important to be counted. Learn about the census and how to complete it in this video (también disponible en español)